Better patient advocacy 4: A New Model Army

Whenever you mention the word advocacy in the context of an illness such as Parkinson’s, most people nod in recognition of same. We all know what advocacy is don’t we. It’s about raising public awareness, right? Well, yes and no. Yes, in the broadest sense it probably is a question of raising awareness but also no, because it goes much further.

But let’s at least make this easy and start with the concept of raising public awareness. But we want to do this scientifically, right? So first we need to be able to define public awareness. What is “public awareness” then? And what are its units? We need to know the units. After all we don’t measure the speed of cars in kilograms or the size of the Earth’s gravitational field in calories. We need to know the units.

Still think it’s easy? Well obviously not and at this point you probably feel that I am dabbling in needless pedantry. It may look like that but I’m making a simple point – if you can’t measure something then you can’t measure a change in that something. And if you can’t measure a change in something then you cannot demonstrate that your outcome has been achieved if you can’t measure public awareness of Parkinson’s then how are you going to show that it has been increased? And, believe me, if you think this is pedantic, I’ve barely broken a sweat.

I’m constantly impressed by the number of people who have “raised public awareness of Parkinson’s” or who intend to do so without the slightest idea of what that might look like. If my objective was to raise public awareness of Parkinson’s I would want to be sure not only that the objective been attained but also that this could be described numerically. Numbers are the currency of science. If something cannot be described in numbers, then I would have a hard time calling it science.

This is the very simplest situation and, in advocacy terms, perhaps the low hanging fruit. If advocacy can achieve nothing else, one would at least hope that it could raise public awareness.

Even allowing for liberties in terms of what it is, how it may be measured and defined, there is still the great unanswered question of why. Raised public awareness is surely not an end point in its own right but a staging point or a surrogate measure. It is tacitly assumed that raised public awareness will somehow achieve some greater good – raise money for research, influence governmental policy, improve living conditions, maybe even hastening a cure for Parkinson’s. This is almost taken for granted. No double-blind studies have been conducted to demonstrate the link between raised public awareness and modified governmental policy. So, if there is no benefit in terms of the things one really wants to change, is raised public awareness a legitimate advocacy objective? Shouldn’t advocates be doing something more useful with their time?

I would argue “yes” and, moreover, the best advocates are eschewing nebulous objectives in favour of more direct action. This is to be applauded.

I would argue that if you want more research, then raise money not awareness. If you want to modify government policy, tackle government directly. Raised public awareness counts for little here. If you want a cure sooner, promote better research.

These are more direct means of influencing change and, to my mind, this is what advocacy is or should be about – high-level interactions with high value outcomes. We should be seated on every drug advisory board, every research steering group, every expert panel, every governmental committee. In essence, we should be represented (by ourselves) in every circumstance where decisions are taken that are of direct concern to us.

But I would go further.

Throughout the first half of the 17th century, armies in Britain were geographically constrained, often acting as garrisons or local militia. There was sparse interaction between such forces and their roles were little more than guarding towns. In 1645, Oliver Cromwell formed the New Model Army, a mobile military force of highly trained soldiers constructed around veteran professionals and young conscripts, the old helping to train the young.

This is directly analogous to the current and, I would like to believe, future role of advocates. Currently, advocates are siloed. Individual charities, research bodies and drug companies have their own advocates with their own policies, remits and strategies. In essence militia. Some things are done well, some less well but there is no sharing of best practice. To my mind, we need a New Model Army of advocates and advocacy.

I believe that advocates have much to learn from each other and from their forebears. I believe that, by sharing best policies and actions, it will be possible for advocacy to evolve into a kind of super advocacy. I see this as a natural progression, organic in many ways, and one which best serves the community. We need to share old knowledge from our wiser heads. We need to share new initiatives from our younger brighter minds. And we need to focus on direct, achievable high-level objectives. This means improving the knowledge base and aspirations of the advocate corps. Raising public awareness simply isn’t enough anymore. Our new advocates need to be aiming higher.